Kennedy Krieger Institute has a new program to diagnose and treat children with a rare condition called neurofibromatosis (NF) in partnership with Johns Hopkins Medicine.
NF is a series of rare genetic conditions that cause tumors to grow throughout the nervous system and potentially impact cognitive, bone, and vascular development. Kennedy Krieger’s new program serves patients ages 16 and under. It is led by Dr. Stephanie Morris, a pediatric neurologist who also serves as JHCNC Assistant Director for Pediatric Care.
The focus is on improving the child’s developmental outcomes and quality of life while they are receiving their comprehensive medical care through the Johns Hopkins Comprehensive Neurofibromatosis Center (JHCNC).
This is an expansion to JHCNC, with Kennedy Krieger’s program providing pediatric care, including neurodevelopmental evaluation and management, genetic testing, physical therapy, occupational therapy, and other services. JHCNC remains the central hub for clinical care and research.
“Neurofibromatosis is often thought of as a tumor condition, but for many children it also affects learning, attention, behavior, and development,” Morris said. “This collaboration brings together Kennedy Krieger Institute’s expertise in neurodevelopment with Johns Hopkins’ strength in NF research and coordinated subspecialty clinical care.”
“This is a major step forward in how we care for children with NF,” said Dr. Jaishri Blakeley, director of JHCNC. “By bringing together world-class expertise in neurodevelopment and NF medical surveillance and care, we are creating a truly comprehensive, lifelong model that addresses not only the medical needs of our patients, but also their cognitive, behavioral, and functional needs. Our shared goal is simple: to improve lives today while accelerating discoveries that will change the future for people living with NF.”
Leaders of both institutions have confidence in a more comprehensive, holistic approach to treating children and adults with NF, and see the collaboration as chance to produce more meaningful scientific breakthroughs for their patients.
“This partnership highlights the opportunities to expand research focused on cognitive, behavioral and emotional wellness for children with NF” said Dr. Carlos Romo, associate director for adult care at JHCNC.
Dr. Ali Fatemi, Kennedy Krieger’s chief medical officer, said the new program, “expands upon the expertise we have at Kennedy Krieger and allows us to better serve our patients with neurofibromatosis, while working toward research breakthroughs.”
The new Kennedy Krieger Pediatric NF Program has already begun accepting patients. To learn more, visit the program’s website.
